Thread by @edyong209

🚨I wrote about “brain fog”—one of the most common & disabling symptoms of long COVID (and many other pre-pandemic conditions), and one of the most misunderstood.

Here’s what brain fog actually is, and what it’s like to live with it. 1/

theatlantic.com/health/archive…

First, what it’s not: Brain fog isn't anxiety, or depression. It’s not psychosomatic. It’s really nothing like a hangover, stress, or tiredness, and comments equating it to those things—“hey we all forget stuff”—trivialize what people are going through. 2/ theatlantic.com/health/archive…

Despite the name, brain fog isn’t a nebulous umbrella term. It’s a disorder of executive function—the mental skills that inc. focusing attention, holding info in mind, & blocking distractors. Without that foundation, one's cognitive edifice collapses. 3/ theatlantic.com/health/archive…

That’s why people w/ brain fog struggle with concentration, multitasking, & planning—which underlie almost everything. It raises unconscious activities to the level of effortful consciousness, and makes easy tasks absurdly hard. 4/ theatlantic.com/health/archive…

Executive function problems also affect memory: The brain can’t effectively focus on what to store or retrieve that info. Many long-haulers feel like they lose parts of themselves. Hannah Davis told me: “It feels like I'm a void & I’m living in a void.” 5/ theatlantic.com/health/archive…

There’s a spectrum. Most people improve & can function normally—but below their old baseline and with MANY accommodations. Some have been sick since the pandemic’s start (900+ days). Others got brain fog from pre-covid illnesses decades ago. 6/ theatlantic.com/health/archive…

Brain fog isn’t unique to long COVID. The same specific problems affect many HIV patients, epileptics post-seizures, cancer patients w/ chemo brain & folks w/ chronic illnesses like ME/CFS. Many of these conditions have long been stigmatized & neglected 7/ theatlantic.com/health/archive…

Some people argue that the colloquial term ‘brain fog’ delegitimizes and trivializes the condition. But disability communities have used it for decades; there are many reasons why it & its associated conditions are neglected, the name least among them. 8/ theatlantic.com/health/archive…

E.g. Most research/teaching about cognitive impairment centers around degenerative diseases of elderly people; docs largely don’t learn about viruses causing neurological problems in young people, and hubris leads to discounting of patient experiences. 9/ theatlantic.com/health/archive…

Also people w/ brain fog are also good at hiding it—it’s intermittent and they just don’t see people on the worst days. Stigma also motivates them to present as normal in social situations or doctors’ appts, furthering the false idea that they’re fine. 10/ theatlantic.com/health/archive…

Many docs also use inappropriate tests—like MoCA, which was only validated for elderly people with dementia—that even people with severe brain fog can ace. Hence: more dismissal. Bad testing is a comorbidity of long COVID. 11/ theatlantic.com/health/archive…

And yet brain-scan studies, blood flow studies, immunological studies, & more all point to physical & chemical changes in the nervous systems of people who have brain fog. It’s a real neurological problem that brings real cognitive impairments. 12/ theatlantic.com/health/archive…

Also, the basic science and the patients’ experiences *cohere*. The possible mechanisms for why brain fog occurs—as detailed in this piece—make total sense of why it affects executive function, why thinking feels slugging, why the fog waxes and wanes. 13/ theatlantic.com/health/archive…

Based on those likely mechanisms, many of the scientists I spoke to were also hopeful that brain fog is reversible. It just needs a lot more research, of the kind that hasn’t happened thus far. That’ll take time, and for now, people need help. 14/ theatlantic.com/health/archive…

Most of the approaches to treating brain fog are about managing symptoms. And that can do a lot. Several people I spoke to can work and do normal things again—but more slowly, at higher cost, with a ton of lifehacks & recovery periods. 15/ theatlantic.com/health/archive…

The single most important advice I've heard from clinicians & patients: You. Have. To. Pace. Yourself. Because brain fog often goes hand in hand with postexertional malaise—where people crash severely after even minor physical OR MENTAL exertion. 16/ theatlantic.com/health/archive…

I cannot stress this enough: For most people with brain fog, exercise—and strenuous mental activity counts, because cognitive work IS physical work—is a completely inappropriate treatment, and could make them substantially worse. 17/ theatlantic.com/health/archive…

I hope this piece makes those of you who have experienced brain fog feel seen. I hope it shows everyone else what it really means. Thanks to everyone who talked to me for this story. 18/ theatlantic.com/health/archive…

Finally, a very common thing that people with brain fog tell me is that they find it very hard to read. This is an almost 3000 word piece. I’m trying to get an audio version put together, and am told it will happen. More on that when I know more. 19/ theatlantic.com/health/archive…

PS. I'm spending as little time on Twitter as possible so won't get to read the replies to this thread. But for the many of you sharing brain fog experiences, I'm sorry. I hope this story helps a little, if only to make it easier to explain to others. And now, logging off again.

PPS. For folks reaching the end of this long thread, there is indeed now an audio version of the story. (On the article page, just beneath the lead image, find the long grey box and click the Play symbol. theatlantic.com/health/archive…)